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Epilepsy Blog Relay™: Jonny is Not Disabled

jonny-photoThis post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30, 2016. Follow along!

This blog post was submitted by Lundbeck, Partnership Sponsor of the November 2016 Epilepsy Blog Relay. 

Kathleen’s Story

Seeing Jonathan today you could not guess at the difficulties he has faced. The frustration of a body that no longer responded to his every whim, of having to sit in a stroller in silence when he had so much to say and do, and seeing the world happen around him, but being unable to interact. This experienced has shaped Jonny in a very positive way. I wrote this when he was 8. He is now 15, and living with Lennox-Gastaut syndrome.

Jonathan has an indomitable spirit. When Jonny was first learning to walk again, the physical therapist tried to help hold him up, but he pushed him away. Jonny preferred a kind of crawl/drag where he would grab hold of the rug or chair with his good arm and drag his body behind. He wasn’t going to accept help from anyone if he could do it himself.

Not Disabled

Don’t ever think of Jon as handicapped, he’s not. He is different from what people expect from a child his age, but he is not handicapped.  He is almost 8 years old, and he’s not even close to being potty trained. He’s working on a K-4 curriculum this year, and it’s challenging for him but that’s not the whole story.  Jonny has more love in his heart and compassion than anyone I know.  He understands the needs of others and works to meet them.

He has never met a stranger. In his eyes, there’s nothing that can’t be fixed by a kind word and a hug. The more stern or angry looking the person is; the more likely Jon will feel the need to let them know they are loved.

My children and I were leaving Wal-Mart one evening. We noticed a group of rough-looking young men. They were twenty-something year old’s all dressed in similar clothes with lots of bling (gold jewelry), and they were parked next to us. The driver looked at us with disgust when we past close to him. Jon stopped and looked up into his face.

“What?” The young man growled at him.

Jon beamed, “I like you!”

The young man’s whole face changed. With those three words Jon had broken down the impenetrable walls of the young man’s heart. He squatted down so he was eye-level with Jon. A face which moments earlier had displayed arrogance and loathing was now filled with kindness and compassion. “Well, I like you too!”  He smiled at Jon.

He must have sat and spoke to Jon for 5 minutes. The young man’s eyes were moist with tears. They hugged, for a long moment. Jonathan is not disabled for God is able to use him in mighty ways. His lack of boundaries affords an ability to show love far greater than any “normal” person.

This post was written by Kathleen Dale who lives in Fort White, Florida, and is mom to Jonathan who has Lennox-Gastaut Syndrome (LGS).
The November 2016 Epilepsy Blog Relay™ was sponsored by Lundbeck – a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at www.LGSTogether.com and through the LGS Together Facebook page (www.facebook.com/LGSTogether). Check out the Facebook page this month and #Flex4LGS to show your support of the Lennox-Gastaut syndrome (LGS) community.

NEXT UP: Be sure to check out the post tomorrow by Paula on http://epilepsy-paula.blogspot.com/. For the full schedule of bloggers visit the Participants gallery.

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Founder and CEO Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.

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